Once in a while, life hands you the opportunity to do something heroic.
Members of our state's Legislature, our governor and the Controlled Substance Advisory Board have a chance to behave heroically for 10,000 children and adults in Utah over the next few months.
But more on that in a minute.
First, I'd like to introduce you to Ogden's Addy Hyer. She's 7 years old. She's in the second grade. And she's attempting to re-learn the English alphabet.
She used to know it, but Addy -- short for Addison -- has "intractable epilepsy." It's a big word for a terrible affliction: seizures that don't respond well, or at all, to medication. Addy's cognitive function is declining -- a side effect of the drugs used to battle her seizures.
"She's taken seven different medications so far," said Addy's mom, Rebecca Hyer. After a while, the drugs' effectiveness declines. Then Addy's parents have to switch to different ones. Right now, Rebecca explains, Addy's taking a combination of three drugs, and one of the punishing side effects is mental regression.
Addy is not alone. About 10,000 Utahns suffer epilepsy with seizures that are "refractory" -- essentially unmanageable. Rebecca explained that in Addy's case, the drugs she's taking currently get her through the day without seizures, "but it's always a roller coaster at night." After bedtime, Addy's had as many as 13 seizures, and the night she had 13 landed her at Primary Children's Hospital.
On Tuesday in Salt Lake City, the state's Controlled Substance Advisory Board will hear testimony from concerned citizens and parents of children with epilepsy. The parents hope to confirm the legality of a hemp-plant extract -- an oil called Alepsia -- that has shown remarkable effectiveness in helping patients with uncontrollable seizures. In Colorado, Alepsia has helped some children with this previously untreatable epilepsy achieve, for example, a reduction in seizures from as many as 300 per week down to one or two.
That means Alepsia gives these children their lives back. They learn to ride bicycles. They learn to read. Their lives are transformed into something close to normal.
As mentioned above, this new hemp extract/supplement may already be legal in Utah. That's because the plant from which it is derived contains only 0.3 percent or less of the hallucinogenic ingredient THC. THC is the component of marijuana that produces a "high." (Recreational weed contains about 20 percent THC -- or 66 times more than Alepsia.)
Unfortunately for Utahns with refractory epilepsy, some media reports have mistakenly referred to Alepsia as "medical marijuana." It isn't -- in any way, shape or form. Alepsia comes from the same sort of hemp plants that are used to produce rope, lotions, fabric, foods, etc., currently available on health-food store shelves across the Beehive State.
Not only has Alepsia proven more effective for many people with uncontrollable epilepsy, but it's much cheaper than almost all of the 25 drugs currently prescribed to treat the disorder. It varies, but generally speaking Alepsia costs about $450 per month to treat a 100-pound patient, as opposed to the thousands of dollars per month so many families are currently spending.
Another benefit: It's a natural product. As Rebecca Hyer explained, "I would much rather give my daughter something God made than chemicals created by man."
This week, the Utah Controlled Substance Advisory Board will have a chance to provide quick relief to children like Addy. But if it requires the Legislature to pass a law and Gov. Gary Herbert's signature, so be it.
If they get that done, they will be heroes in my book. And if Alepsia works for Addy -- and I pray that it does -- they'll be heroes in the Hyer family's book, too.
Email Don at firstname.lastname@example.org.